Sick to death of psoriasis

[TeddyIsaHe]

I have finally been referred to a dermatologist and a rheumatologist so this is more a moan than anything else.

I’ve had psoriasis for 15 years and I’m sick, sick sick of it. It’s painful, unsightly, itchy and now in my joints meaning at 30 years old I can barely walk (not fun with a lively 2 year old).

I’ve tried everything except biological treatments. The only time I’ve been free of it was when I was pregnant. I have Guttate, scalp, plaque, nail, inverse and psoriatic arthritis.

Anyone else want to join me in venting about this bloody awful disease? Fuck psoriasis!

Also want to recommend Humira. It's been an absolute miracle cure for dd. She's now 18, and has been under consultant care for years - we've gone through the creams, the methotrexate, all the rest of the possible drugs, UV treatment, tried different diets. Nothing worked, we just had to try and keep on top of it with the creams but it was horrible for her. She did her GCSEs in a lot of pain with great itchy bleeding scabs everywhere.

After turning 16 she became eligible for Humira. 2 weeks after she started it she was 50% clearer. A month after 70%. Two months in she was almost completely clear, and has stayed that way since. No side effects at all (possibly a but of weight gain, but it's a small price to pay.) it's incredible and I'm so grateful for it. She says it's changed her life - she was bullied so badly about her skin, and it affected her in every area. Now she's free of it apart from the odd plaque on her scalp/elbow. So well worth asking about it.

I do sympathise - it really sucks.

Madhair that’s wonderful for your daughter, it makes such a difference to be rid of the bloody thing. She must be so pleased! Especially at that age when looks are hugely judged by peers.

Humira is giving me hope! If it treats both the psoriasis and arthritis with little side effects I’m going to push for it I think.

mooncup not to sound snippy, but do you have psoriasis? Honestly, the amount of times someone has told me to cut whatever out of my diet/ take turmeric etc is endless. It doesn’t work for people win sever psoriasis. It just doesn’t.

*with severe

Humira is a biologic and it's not the first thing you will be offered. NICE guidelines state you have to fail two DMARD's before you are legible for a biologic.

You (unfortunately) don't get go in and pick what medication you want.

You'll most likely be started on Sulfasalazine and / or Methotrexate.

I haven’t heard of humira, I have been assuming I will be able to try something like methotrexate once I finish having babies but that is easily 5 years away 😫. Daivobet daily isn’t cutting it, but I’m sure it is affecting my healthy skin unfortunately. I have chronic plaque which manifests like guttate on 95% of my body and I hate it. It’s been 25 years. The uvb light treatment is very effective for me but I have had a lot of it and my insurance won’t pay for another round in the U.K. when I go back to australia I will go back to the dermatologists and ask for my options.

Sorry, OP, it is completely beside the point of the thread, but for some reason I keep reading your title as ‘Sick to Death of Proposals’, and getting a mental image of you batting away a queue of suitors armed with ring boxes and beseeching expressions.

Oh grr Crunchmum that’s what I was dreading! I’ve read the horror stories about methotrexate side effects and I really wanted to avoid it.

Parthenope I wish that was the issue!

Side effects are nasty but it's the most common medication used (and therefore has a high success rate!) so there are lots of people it does work for.

It will be apparent pretty quickly if it's not for you and they'll move you on.... or it will work for you? So worth a shot.

Just to say, methotrexate isn't that bad. It didn't suit me - plus we were considering TTC - but it's been great for my dad (both skin and joints). I had more side effects with sulfasalazine but it turns out that I was allergic to it which is quite rare apparently.

My Dp has similar issues he’s been on Methotrexate and folic acid for almost a Year, no side effects. How ever we seem to have reached a point where is not getting worse but not getting better.

It seems our children have inherited it too. Sadly.

Psoriasis at two. Arthritis at 14. Now 60. Also got UC and alopecia!
Hands have been particularly bad this winter.

Methotrexate isn't nice but it isn't terrible (for me anyway). A couple of days of feeling unwell and a bit sorry for myself but not bed ridden. Sulfasalazine was horrible at the start but is fine now.

You have to try 2 before they'll give you a biologic but they might be fine and work well.

You have my sympathies, OP. My DM has it. Sometimes covered from head to toe. Once she went to bed for 2 weeks.

None of the medication, steroids, light treatment helped her. Strangely, boiled water did. Any water she drinks now has been boiled. She still gets break outs but no where near as bad. Might be worth a go. It may not work for you but it doesn't cost anything and won't do any harm.

PsA here. I've just come back from doing the pre-biologic screening (HIV, Hep B, Hep C, TB screening and a chest x-ray). If it turns out I've been in contact with TB (I had a positive Mantoux Test, so didn't have a BCG), I'll have to spend six months being treated with a cocktail of drugs intended to kill that off before starting Humira.

They've also submitted an application for individual funding - they've had to list every medication I've ever been on and I'm already on the maximum injectable dose of MTX but there is clear active disease.

It's not a first line treatment - it's somewhere around ten thousand pounds a year for the NHS to treat ONE person - and many can reach remission of symptoms with other medications.

It's shit. Absolutely fucking shit. But, on the bright side, they gave me an im steroid shot today, so within 1 hour, I didn't feel like death for a change.

Well nothing you have done so far has worked but yeah, don’t even google psoriasis and autoimmune. Don’t be curious at all. You’d never find any evidence of it working. Never

You have no idea what I have and have not tried, you have no idea who I have spoken to and what I have read. No I'm not going to google because I read medical journals where real evidence is examined not anecdotes.

Do you also recommended a change in diet for MS?

Research seems to be pointing the way of MND also being an autoimmune disease, maybe if Stephen Hawking had changed his diet he would still be with us?

Do you even realise how fucking patronising you are being? I work WITH a team of very well trained professionals, I am a trained Medical Physiologist, although no longer practising.

Biological are an absolute game changer. There is a scoring system for you to be able to get them based upon severity of your psoriasis but if you can get through that it is fabulous.

My MH was being impacted by my psoriasis which forced a quicker treatment path. I was incredibly depressed and broke down at the hospital during a consultation. I'd just had a toe joint removed due to psoriasitic arthritis

I've now been on 4 different biological starting with humira for about 8 years the only reason I switched from humira was because it wasn't as effective as it used to be. But there are now so many developments in the field there is no reason for anyone to suffer

Sorry worth saying I'd been through the treatment cycle of creams, light treatment and other drugs before biologic. I missed one drug as was trying to conceive through IVF and was lucky enough to have a sympathetic consultant who allowed me to skip that step

Ask for biologics.i have a daughter with arthritis she has been diagnosed since 7.

We used to hobble in for her treatment and once her infliximab drip had been given she literally bounced out.

Ask about steroid injections (really not that bad)

Ask about methotrexate too.

All of these things keep her mobile and yes she does have pain but no she doesn't have as much and can move more freely. They are life changing.

She has psoriatic and enthesitis related arthritis. She's now 22. Talk about anti tnf treatment.

Methotrexate is a good drug for both psoriasis & arthritis. Most people tolerate it quite well.
Sulphasalazine works for joints but has no effect on psoriasis.
There are other drugs eg cyclosporin that can be tried.
Rules for psoriasis & arthritis are a bit different but in arthritis if you were ttc the usual requirement to try methotrexate before a biological is waived. There are otherDMARDs which can be tried.

Sorry just seen you’ve tried all but a biologic. Assuming you’ve already failed on methotrexate & UV treatment then a biologic is a good option. Side effects are usually minimal- sometimes stinging around the injection site and a slight increased risk of infection main things.

Methotrexate works for me.

So does summer. I always get worse in the winter. Unfortunately there's no light treatment thingy near me. I have been thinking of a medicinal holiday somewhere hot and sunny about now. Anybody else tried this?

Got my rheumatology appointment through for next month which is much quicker than I expected! I’m hoping that whatever treatment they suggest for my joints will have a knock on effect on my skin as well, 2 birds with one stone and all that.

They'll prescribe something that should work on both - and if it works on one, it'll be very likely to work on the other.

There might be a lot of faffing about finding the correct meds and dosages (and lots of blood tests/come back in 6/8/12 weeks/3/6 months and we'll see how it's responding, plus x-rays and the like - take drinks, a couple of snacks, charge your phone and take at least one book - and be prepared for a very busy clinic and delays hanging round different parts of the hospital for different tests).

The best topical treatment I had was Dovobet. That stopped a full body covering in a couple of weeks. But the other thing that hospitals can do if it's indicated is, rather than give you steroid tablets, they might offer an im steroid (sometimes called a Pulse). They seem to have fewer side effects (no moon face/weight gain in my case) and the dose is actually lower by equivalent because it doesn't have to get through the digestive system first.

Not all places like doing them due to long term effects, but, depending on the type, they can give you 6 - 12 weeks' respite whilst other meds are taking effect.

Loads of information there, thanks @MitziK

I use Dovobet currently, but it’s starting to be less effective. It used to make my patches look better in a couple of days, now there’s hardly any change in a week. Really frustrating.

I’ve got bloods booked ahead of the hospital appointment, so hopefully that will cut down some time!

Quick question if anyone knows - if I’m not having a flare up of PsA will they still medicate for it? One foot is quite bad at the moment, but other joints aren’t glaring as much. No idea what to expect really!

They'll base it upon symptoms and your inflammatory markers.

And I'm willing to bet you still need a good armful of bloods done. GPs don't test for everything the consultants need (but make sure you get a printout of the tests at the GP to take with you, as most don't share results automatically, which is crap when you've just been vampired and the bruising hasn't gone down yet, only to be told you need to do it again).

Ask about getting your Vitamin D levels checked as well - I had a severe deficiency picked up by Rheumatology when the GP insisted it wasn't necessary. You may very well douse yourself in it(!) but that's different to what's in your diet/bloodstream.